It can creep up at any time, envelop you in its proverbial black cape and stay there, making you think and worry, fearful for the future.

I’ve been thinking back this since our daughter turned 13 in May, she received her autism diagnosis at 4.5 years so she’s been defined by this “label” longer than she hasn’t. Scary eh?

The last few years have gone by in a flash and she’s heading into year 9 in September, 9 will turn into 10, 10 into 11 and then what?

She’s very lucky to be in the right setting for her, it became very apparent that mainstream wasn’t appropriate for D and, once we’d appealed against a statement rejection and had a successful appeal, we were able to get her into SN school within a term.

It felt a tough decision at the time: so do we “stick” with mainstream, recognising that D was finding it all way too challenging and hope for some sort of qualification at the end of a (angst-ridden) time in mainstream; or go with our hearts and choose SN school, with its smaller class sizes and its focus on “life skills”?

It was an easy one after deliberation, we wanted our daughter to be as happy as she could be, anything else would be a bonus.

And she is, more than is. We’ve listened with absolute joy as she reads, clapped as we watch her class performances and marvelled at the fact that she’s there, on stage, when in mainstream she was too nervous to enter a school hall, too full of anxiety to participate in any activity.

But, we know that in a few short years, it will all change, she’ll be too old for school and what next?

A college placement in a huge sensory-filled building?

What if it all becomes too much?

What if she’s singled out?

What if someone suggests something and she says “yes” as she doesn’t have the confidence to say “no”?

What if the bus to college is late and she starts to walk, with zero road sense? Or gets into a car?

What if there’s a job placement and other people don’t understand and accept her?

What if she’s bullied and is told not to say anything? If it were by a person in her perceived authority, she wouldn’t but just twist herself in knots, tighter and tighter.

What if she doesn’t get a job or college placement?

What then?

And my biggest fear of all, how will she cope when we’re no longer around?

At best, her and T tolerate each other, would they be able to get on (ish). Neither of them would consider the other when it came to meals (not that either of them could cook).

I don’t like to think like that but no-one is immortal, I’d love to be, to always be there.

That’s the fear that keeps me awake sometimes.

I may appear to be all “yay, general anaesthetic in five weeks with my first op and then another before the end of the year” to rectify things from last October…